“But she’s also incredibly resourceful. She used a number of inventive strategies today to answer questions correctly that she couldn’t actually remember correctly.”
“But there were a lot of questions that she couldn’t answer correctly, regardless,” said John.
“Yes, that’s true.”
“It’s just getting so much worse, so quickly. Can we up the dosage of either the Aricept or the Namenda?” asked John.
“No, she’s at the maximum dosage already for both. Unfortunately, this is a progressive, degenerative disease with no cure. It gets worse, despite any medication we have right now.”
“And it’s clear she’s either getting the placebo or this Amylix drug doesn’t work,” said John.
Dr. Davis paused as if considering whether to agree or disagree with this.
“I know you’re discouraged. But I’ve often seen unexpected periods of plateau, where it seems to stall, and this can last for some time.”
Alice closed her eyes and pictured herself standing solidly in the middle of a plateau. A beautiful mesa. She could see it, and it was worth hoping for. Could John see it? Could he still hope for her, or had he already given up? Or worse, did he actually hope for her rapid decline, so he could take her, vacant and complaisant, to New York in the fall? Would he choose to stand with her on the plateau or push her down the hill?
She folded her arms, unfolded her crossed legs, and planted her feet flat on the floor.
“Alice, are you still running?” asked Dr. Davis.
“No, I stopped a while ago. Between John’s schedule and my lack of coordination—I can’t seem to see curbs or bumps in the road, and I misjudge distances. I had some terrible falls. Even at home, I keep forgetting about the raised thingy in all the doorways, and I trip into every room I go in. I’ve got tons of bruises.”
“Okay, John, I would either remove the doorway thingies or paint them a contrasting color, something bright, or cover them in brightly colored tape, so Alice can notice them. Otherwise, they just blend into the floor.”
“All right.”
“Alice, tell me about your support group,” said Dr. Davis.
“There are four of us. We meet once a week for a few hours at each other’s houses, and we email each other every day. It’s wonderful, we talk about everything.”
Dr. Davis and that woman in that little room had asked her a lot of probing questions today, questions designed to measure the precise level of destruction inside her head. But no one understood what was still alive inside her head better than Mary, Cathy, and Dan.
“I want to thank you for taking the initiative and filling the obvious gap we have in our support system here. If I get any new early stage or early-onset patients, can I tell them how to get in touch with you?”
“Yes, please do. You should also tell them about DASNI. It’s the Dementia Advocacy and Support Network International. It’s an online forum for people with dementia. I’ve met over a dozen people there, from all over the country and Canada and the UK and Australia. Well, I’ve never actually met them, it’s all online, but I feel like I know them and they know me more intimately than many of the people I’ve known my whole life. We don’t waste any time, we don’t have enough of it. We talk about the stuff that matters.”
John shifted in his seat and jiggled his leg.
“Thank you, Alice, I’ll add that website to our standard packet of information. How about you, John? Have you yet talked with our social worker here or gone to any of the caregivers’ support group meetings?”
“No, I haven’t. I’ve had coffee a couple of times with the spouses of her support group people, but otherwise, no.”
“You might want to consider getting some support yourself. You’re not the one with the disease, but you’re living with it, too, by living with Alice, and it’s hard on the caregivers. I see the toll it takes every day with the family members who come in. There’s Denise Daddario, the social worker, here and the MGH Caregivers’ Support Group, and I know that the Massachusetts Alzheimer’s Association has many local caregiver groups. The resources are there for you, so don’t hesitate if you need them.”
“All right.”
“Speaking of the Alzheimer’s Association, Alice, I just received their program for the annual Dementia Care Conference, and I see you’re giving the opening plenary presentation,” said Dr. Davis.
The Dementia Care Conference was a national meeting for professionals involved in the care of people with dementia and their families. Neurologists, general practice physicians, geriatric physicians, neuropsychologists, nurses, and social workers all gathered in one place to exchange information on approaches to diagnosis, treatment, and patient care. It sounded similar to Alice’s support group and DASNI, but bigger and for those without dementia. This year’s meeting was to be held next month in Boston.
“Yes,” said Alice. “I meant to ask, will you be there?”
“I will, I’ll be sure to be in the front row. You know, they’ve never asked me to give a plenary presentation,” said Dr. Davis. “You’re a brave and remarkable woman, Alice.”
His compliment, genuine and not patronizing, was just the boost her ego needed after having been so ruthlessly pummeled by so many tests today. John spun his ring. He looked at her with tears in his eyes and a clenched smile that confused her.
MARCH 2005
Alice stood at the podium with her typed speech in her hand and looked out at the people seated in the hotel’s grand ballroom. She used to be able to eyeball an audience and guess with an almost psychic accuracy the number of people in attendance. It was a skill she no longer possessed. There were a lot of people. The organizer, whatever her name was, had told her that over seven hundred people were registered for the conference. Alice had given many talks to audiences that size and larger. The people in her audiences past had included distinguished Ivy League faculty, Nobel Prize winners, and the world’s thought leaders in psychology and language.
Today, John sat in the front row. He kept looking back over his shoulder as he repeatedly wrung his program into a tight tube. She hadn’t noticed until just now that he was wearing his lucky gray T-shirt. He usually reserved it for only his most critical lab result days. She smiled at his superstitious gesture.
Anna, Charlie, and Tom sat next to him, talking to one another. A few seats down sat Mary, Cathy, and Dan with their husbands and wife. Positioned front and center, Dr. Davis sat ready with his pen and notebook. Beyond them sat a sea of health professionals dedicated to the care of people with dementia. This might not be her biggest or most prestigious audience, but of all the talks she’d given in her life, she hoped this one would have the most powerful impact.
She ran her fingers back and forth across the smooth, gemmed wings of her butterfly necklace, which sat, as if perched, on the knobby tip of her sternum. She cleared her throat. She took a sip of water. She touched the butterfly wings one more time, for luck. Today’s a special occasion, Mom.